To a loved one of someone with a chronic illness:
The intention behind this letter is to share the importance of believing and validating your loved one with chronic illness. This may seem simple, and perhaps even obvious, but the power behind these actions can be life changing for your loved one.
There are many chronic illnesses like ME/CFS, Long COVID, fibromyalgia, POTS, MCAS, etc. that are ambiguous with not only their origin, but also their ability to be diagnosed. Many of these diseases lack a diagnostic biomarker (measurable substance indicative of the specific disease) which may lead to endless testing and clinical procedures in the search of a diagnosis. This can leave the patient feeling disbelieved, isolated, and invalidated.
There is a cycle of trauma that occurs when an individual does not feel safe, heard, and/or supported. The lack of validation created from “normal” test results, can further seep into the individual’s interactions with their medical providers, caregivers, loved ones, and friends. This may lead all parties to experience a range of emotions including grief, loss, and uncertainty on how to best support and proceed with medical care.
Adding to the complexity, the fluctuation in symptoms, severity, energy levels, and sensitivities can be challenging for your loved one to explain. They may not feel understood or believed, which can precipitate isolation and feelings of self-doubt.
People heal emotionally and physically through having nurturing and safe spaces. By supporting and believing your loved one, you can also gain an understanding around their suffering, which will help build trust and a place where you can have open dialogue about how to support their needs.
Build a strong foundation of trust, compassion, empathy, and security. Your ability to show support through listening, seeking to understand, and validating your loved one will provide hope and comfort that they may desperately need.
Thank you for caring enough about your loved one to find resources like this one.
Sincerely,
A Therapist’s Perspective
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The resource was announced at the ME/CFS and FM Awareness Day event, “Messages of Hope,” on May 12, 2021.
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.